What It Feels Like to Have Interstitial Cystitis

This post is not pretty. This post is not sugar coated. This post is scary, this post is raw, this post is real. That's what IC is, it's scary, raw and real. That's also what life is at times. 

So what does it feel like to have IC? 

It hurts, it hurts like effin hell. Imagine someone taking a tub of battery acid and throwing it over your bladder when you least expect it, that's how it feels. When you have IC there can be so much pressure weighing on your bladder that it feels you are going to throw up and now and then, you do.

IC can feel like someone is taking a knife or a hot poker and stabbing you in your genitals over and over and over again. Some other days it may feel like a million pins are stabbing your genitals. Don't forget about the electric shock type nerve pain that can come with IC. Sometimes you may jump out of your chair or make a noise as that painful, electric pulse sears through your genitals, pernieum, spine and bladder.

Sometimes IC can make you feel like your pee or your genitals are truly on fire. There are very few ways to put out this fire. Medicines, creams, gels etc. Sometimes they work, sometimes they don't. IC can make it hard to sit for a long period of time because sitting causes pressure on the pelvic and bladder region making symptoms worsen.

If you have IC sometimes you will get the overwhelming urge that you have to pee maybe one, two or three times an hour (or more for some). You will stop whatever you are doing and RUN to the bathroom. If you ignore this urge b/c there is no bathroom available you will be in intense pain. Once you get to the bathroom you sit there miserable. Even though your body is saying that you MUST go, sometimes retention gets in the way and it can take ten minutes for the urine to come out. Finally, you have relief (maybe a lot of urine came out, maybe only a few drops) but not for long as you may be doing this same activity again in an hour if not sooner.

This illness can make you itch and have spasms in places you never imagined. These spasms can make it hard to walk from one room to another. Concentrating as your bladder spasms can be near impossible at times.

IC an make you fatigued all the time. Living in pain is hard. Living in pain can make getting up or taking a shower a challenge. Chronic pain wears the body down. You may see many people with IC doing normal things: shopping, working, driving, dining out. It doesn't mean they don't hurt. When an illness has no cure, you do what you have to do and smile to mask the pain. 


Having IC can lead to depression and anxiety. IC can cause you to need more time to rest and it can prevent you from being able to participate in certain activities. Friends and family may not understand. The lack of understanding can make you feel isolated leading to more depression and anxiety, it's a vicious cycle. Also, not knowing where bathrooms are when you leave the house can be a big trigger of IC anxiety.

These are the main symptoms, there can be many others. This disease is ugly. This illness is a monster. This illness wants to dominate and win, but you must refuse to let it win.

This post was not pretty. This post was not sugar coated. If you didn't like it b/c you thought it was too blunt, too honest or too gross then maybe you can't handle life. Not all parts of life are rainbows and sunshine. 

IC hurts. IC is depressing. IC is not pretty, but IC is real. 

Always Be Thankful for Your Health (and cute pajamas)

When I was a little kid, old ladies used to tell me to be thankful for my health. Well, I found out sooner in life than I wanted to that those beloved little old ladies were right. Healthy people often take health for granted. I mean it is easy to. Sometimes when you feel good it is easy just to work, play, travel and live and not think about what would happen if you ever got sick. Part of it may be that no one wants to think about getting sick because it is depressing. If you are reading this and you are totally healthy, take a moment to be thankful.

Now, IC has definitely made me realize that health is something to be thankful for. I never imagined only a few years ago that I would be 27 and fighting with doctors and having a weaker bladder than Betty White. I never imagined that I would find myself curled up with a heating pads on nights when I would rather be out with friends. But nonetheless, here I am. IC is real. Thousands of painful conditions are real. Even though IC can't kill you, it can certainly make life miserable at times.

Yes, these are my real pajamas, aren't they cute?

Despite the fact that I have IC however, I am still very thankful for many things that make having IC just a little bit easier. It is easy to get wrapped up in being negative (which I admit on some painful days I do) but there needs to be a time to stop and look at the positive. Little blessings are hidden everywhere and as bad as you may think your life can be at times there is always someone out there some place going through something worse.

I may have IC, but I am thankful that I also have:

-Health insurance to lower the cost of my doctor appointments and medications

-A car to get me to and from said appointments

-A husband, family and friends who stick by me

-Ice packs, heating pads, cushions and other tools to help me when I am in pain

-Lots of cute pajamas to wear on days when I am too sick to go out (hey, just because I am in pain, doesn't mean I can't still look adorable hehe)

So well I do like to bitch and moan sometimes about plenty of IC related things (pain management issues, insomnia etc.) and plenty of non-IC related things (student loans, rude people, the high cost of living) today I will be thankful for the things that I do have.

I may not have a perfect life (who does?) or a totally pain free life, but I do have a lucky life with plenty of blessings.

And even though I have IC and it is clearly no fun, I am still thankful for the parts of my health that I do have. Some people can't walk, can't see, have trouble breathing etc. and I am very blessed that I don't suffer from any of those issues. 

So this Thanksgiving season take the time to be thankful for things: big things like your health and even the little things like cute pajamas.

I wish all of my readers and your families a happy and blessed Thanksgiving filled with lots of turkey and minimal pain flares for you IC gals.

IC: An Unpredictable Beast

Sometimes I think what I hate the most about IC is its unpredictability. In life, I have always been a planner. I was always the person who would have my weekend plans ironed out by Wednesday night. I was the person back in school who would finish a paper due on Tuesday by Sunday.  IC is a planner's nightmare.

Life with IC is like waking up everyday and 

having to roll a set of dice.

An IC patient can be fine one minute and in 10 pain the next. The pain can be so bad that it shoots through your bladder and your leg and flat out just makes you nauseous. IC flares are so mysterious. IC flares ruin plans, ruin days, ruin nights. Sometimes I may even be on the way some place and feel fine and then feel sick by the time I get there. Sometimes I will live life carefree and "normal" for five days straight and then BOOM out of nowhere my IC likes to remind me that I am not alone in my own body.

All IC patients have medications and tips and tricks to attempt to avoid flares, but nothing is guaranteed to work. Since no one knows what exactly causes IC, flares find their ways to surface. 

I wish IC had a pattern, had a rhythm, had some sort of cycle...but it doesn't. I don't think I have ever cancelled plans on someone until IC came along. I love reliability, but IC does not. 

I'll keep this post short and sweet: IC is an unpredictable beast. I wish someone would figure out how to tame this beast already. 

Dear Insensitive Doctors...

I am lucky that after a long struggle, I am pretty comfortable with my set of doctors. Some of them even go above and beyond and are awesome.  Today however, I was forced to see a doctor outside of my usual set of four. A doctor I did not want to see. It brought me back to a sad time in my life.  This doctor was unprofessional and cruel.  He judged me, my regular doctors and my treatment.  I have fought too long and too hard and come too far to have someone bring me down like this. Unfortunately, I cried in front of him.  I cried not because I am weak, but because there was just no other way to let out emotion when someone is being unreasonable and unsympathetic.  

So I would like to give this message to the world...

Dear insensitive doctors,

You don't always know what is best for someone after meeting them for 20 minutes.  Many patients with rare conditions have to be their own advocates until they find proper care.  Just because we don't have a medical degree, doesn't mean we don't know what is best for our own bodies.  Just because your "textbook" patients respond well to your treatments, doesn't mean that they are appropriate for people with multifaceted illnesses. If you're a doctor of any sort, it is probably good to have some general knowledge on all sorts of conditions.  Using Google in front of me is not impressive. All you insensitive doctors could learn a thing or two from the doctors that listen to their patients.  You could take some tips from the doctors who will run that extra test or research that new treatment to help their patients.  Insensitive doctors, when did you stop being human and start being robotic?  It takes brains to graduate with a medical degree, but it takes a lot more than that to be a great doctor.

Love always,

One of the many people who have been brought to tears by an insensitive doctor

I thought my days of having to deal with insensitive doctors was over, but I guess we never know what curve balls life will throw us next.  It makes me thankful for the doctors that I usually see.  

Today I cried tears.  They were not silent this time.  They were actually quite embarrassing.  But crying this time made me realize something important.  It made me realize why this blog and other personal health blogs are important.  Us veterans of dealing with insensitive doctors can be there for the people who are experiencing these issues for the first time.

If you have been brought to tears by a doctor, know that you are not alone.